Data Safe Haven
In the UTOPIAN Data Safe Haven, de-identified electronic medical records (EMRs) are extracted from primary care practices and are available for research purposes such as secondary data analyses, using the data for clinical trials or linking it to other data sets such as administrative data held at Institute of Clinical Evaluative Sciences (ICES). Significant work has been undertaken to extract and transform EMR data which has been de-identified to maintain the highest standards of privacy. Family Physicians as custodians of these data have a key role in ensuring that public confidence is maintained. This need for confidence goes far beyond just getting the right level of data security and privacy. When a patient registers with a FP and seeks healthcare, the normal expectation is that her/his health data will only be shared within the circle of care and with appropriate providers and organizations in order to provide direct care. Issues of trust and consent for sharing for direct care are already addressed by policy and professional guidance but potential secondary uses need to be considered if Ontario is to develop this capability in a way that other jurisdictions have achieved internationally. Through UTOPIAN, we are developing an Ontario Primary Care EMR Database that will provide a data extraction and analysis service. It will be based initially on the FP practices participating in UTOPIAN but will be expanded to include other parts of Ontario and other health structures such as Community Health Centres. It is building on rich experience in the extraction, transformation and use of EMR data done by DFCM members through the Canadian Primary Care Sentinel Surveillance Network (CPCSSN) and Electronic Medical Record Administrative data Linked Database (EMRALD).
The Canadian Primary Care Sentinel Surveillance Network - UTOPIAN regional network
CPCSSN is a multi-disease electronic medical record surveillance system that aims to improve the quality of care for Canadians. By collecting de-identified health information from the EMRs of participating physicians (also referred to as sentinels), CPCSSN has created a platform for multi-level research across Canada. Primary care EMR data are extracted quarterly; the data are cleaned and coded using case definitions developed for the following conditions: diabetes, hypertension, COPD, depression, osteoarthritis, epilepsy, Parkinson's disease and dementia (CPCSSN case definitions). To obtain more information about access to CPCSSN national data, click here.
To see the current UTOPIAN projects using CPCSSN national data please check Projects and Publications section (click here )
In the Greater Toronto Area, CPCSSN runs under the UTOPIAN umbrella allowing us to provide researchers with EMR-related resources across all participating sites which are contributing data. Through CPCSSN, UTOPIAN is able to run multiple queries for patient eligibility based on specific project needs. This helps researchers identify sites of interest for their study population. By using preliminary de-identified data, it is possible to coordinate with site-specific data custodians to vet potential patients for clinical trials. UTOPIAN is also able to share ready-to-use queries with sites in order so that these can be executed on identifiable patient data for study-specific purposes (i.e. sending study invitation letters/e-mails to eligible patients).
In Q3 2016 (30.9.2016), the dataset contained 439,134 de-identified patient primary care records (see below for statistics).
The CPCSSN-UTOPIAN dataset is available for research, contact Ivanka Pribramska, UTOPIAN Research Administrator for more information how to access it.
Below are few resources providing more information about this dataset: